'If my disabled son still lived at home, I wouldn’t be here now’

The deaths in New Malden have focused attention on the plight of the parents
of disabled children – something this mother understands all too well

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Jane Raca with James. 'Loving James has enriched my life immeasurably,' she says

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James Raca

By Jane Raca

7:00AM BST 27 Apr 2014

In the summer of 1999, I was sitting on Whitby beach with my husband, Andrew, and our two-year-old toddler, Tom. There was a strong breeze that kept blowing sand into our ice creams, but the sky was bright blue, and the sun danced on the surface of the sea.

I didn’t know that the next day would bring a tsunami with it, one that would destroy the life I knew and leave me to rebuild a completely different one. I was only 24 weeks pregnant and my waters broke. Three days later, James was born weighing just 1lb 12oz, with extensive brain damage.

Until then, Andrew and I had lived in a state of comfortable ignorance, as affluent professionals. We had a nanny for Tom, and a nice house. James’s birth catapulted us into a different world, of life-and-death decisions, social workers, and the isolation caused by society’s lack of understanding about disability.

James is now 15, and has cerebral palsy, epilepsy, severe learning disabilities, and is severely autistic. He is doubly incontinent, can’t walk or talk, and can’t use his left hand.

Most people go silent when I recite this list. I like to add, then, that James is blond, blue-eyed and handsome, has a great sense of humour and will swipe the apple out of your lunch box before you can blink. It’s taken me 15 years, though, to be able to speak about him with equanimity, and I nearly didn’t make it at all beyond the first five years.

The seismic shock of his early birth, followed by the grinding reality of 24-hour caring with no support, led me ultimately into a state of suicidal depression. I escaped because I had a complete breakdown. Recognising that I couldn’t carry on, I used my skills as a former lawyer to take the council to court to get James into a residential school.

When the news broke last week that Tania Clarence, a nice, middle-class mother in New Malden, south London, appeared to have killed her three disabled children, I heard interviews with shocked neighbours saying how she had seemed so nice, she had seemed to be so happy and in control. We do not know what has happened in Mrs Clarence’s case – that is for the courts to decide – but the comments from the neighbours did make me think about my situation. There was a disparity between the coping face I had presented to the world and the awful reality I was living with at home.

It had probably been more insidious because at first we could cope. When James was discharged after four months in the neonatal unit, we were just grateful that he was alive. He was easily portable and particularly cute, with a ready smile and no obvious movement difficulties.

Then he became bigger and heavier, and my back began to ache from carrying him up the stairs. He grew out of the nappies I could get at the supermarket and we had to have special incontinence pads. The pushchair was replaced with a wheelchair, and a lift-hoist and ramps were installed in our house.

Knowing James may never walk was one thing. Getting his first blue badge in the post gave me the first of many days of searing emotional pain. James started to have seizures; always at night, and mostly silently. I would find him in the morning, sometimes blue-tinged and staring vacantly, having been sick. My sleep became restless with anxiety. I woke at every murmur, and would get up each time to check he was OK. Once his stiff arm got stuck in the bars of his cot and I raced in to find him in agony.

Then the nights took on a sinister new turn, as his autistic behaviour became more pronounced. He would often move his bowels in the night and play with the result, creating what we came to call “poo-fests”. It took hours to shower him from head to foot; to change the bed and disinfect the walls.

By the time James was five, I had given up all idea of work and was a full-time carer. In order for Andrew to function at his job, I had taken over most of the night duty.

Andrew and I were living in parallel universes. I was juggling several hospital appointments a week along with medication charts and a cohort of visiting therapists. The therapists gave me jobs to do such as standing James in a special frame, or stretching his stiff arm.

All the time I was stupefied by a lack of sleep. Meanwhile, Andrew was trying to come to terms with days that started with him calling an ambulance because James had stopped breathing, then continued with him putting on a suit and advising clients.

Tom, our other son, had become silent and withdrawn, until one day he burst out that he must be the loneliest boy in the world. We realised that we had been so busy caring for James that we hadn’t even had time to teach Tom to ride a bike. After that we took turns to take Tom out for a pizza or a film. We couldn’t take James because he was, by then, so terrified of change that he would attack us if we took him out of the house. The family was split and I, in particular, was under house arrest.

When James was five, Andrew and I attended an appointment with James’s community consultant, who made the mistake of asking how we were. We both broke down and wept. She asked us if we had any respite and we didn’t know what she meant. We discovered, then, that James was a “child in need” under legislation and that the local authority had been under a statutory duty to support him from birth. Five years too late, we were appointed our first social worker. It was then that we discovered the world of cash-strapped councils, and inefficient social-services departments.

It took a year – and an appeal – to get two nights of respite a month, when James would stay at a specialist centre. At first, to have even these little breaks was akin to a survivor in a desert being given a few drops of water. It saved our lives, and despite the tiny quantity, was intoxicating. We now had a baby daughter, Elizabeth, and we managed to give her and Tom trips out of the house, like normal families.

It wasn’t enough, though, and the inexorable downward spiral continued. I stopped being able to cope but, when asked how I was, I would still give a smile and say “fine”. The sense of unreality between the self I was presenting outside and the way I was feeling inside intensified.

I didn’t dare lose control, because my outward composure was the only thing that made sense to me and enabled me to deal with other people. What would we all do if I let out the feelings of panic and hopelessness that had taken over my life and just disintegrated?

But then I began to have images flash into my mind of drowning myself in our local reservoir. I didn’t plan the thoughts, they just popped up. I would suddenly be dreaming that I was at the edge of the water, with a ball and chain around my ankle. I would be about to wade in to the cool water until it closed over my head and shut out the chaos above. I never thought of hurting James or the other children, and the suicidal thoughts remained just that: thoughts.

I watched Rosa Monckton’s documentary, When a Mother’s Love is Not Enough, about mothers in my situation who had contemplated killing themselves and their children (Monckton herself has a daughter with Down’s syndrome). I understood their logic that if they couldn’t carry on, they would take their children with them in order to protect them. They didn’t want to leave them behind, being so vulnerable.

I have never wished James had died as a baby. Loving him has enriched my life immeasurably and he is the bravest, funniest person I know. He has an iPad now for evenings, which is locked in a safe outside his bedroom at school. After watching the staff open it a few times, he cracked the code, crawled over and fetched it out himself.

He now lives a full and happy life at Dame Hannah Rogers’ Trust in Devon, where he is checked every 15 minutes at night for his epilepsy, by nurses who work shifts, not 24 hours a day. We visit him every school holiday, and because of the expert psychological input he has had, we can take him out on trips. We have a wheelchair-adapted van, and he will come out with us to places such as the beach, which we couldn’t have contemplated when he lived at home.

Some people have still found it difficult to accept how I could “let go” of the care of my son if I really loved him. The answer is that I haven’t really let him go. I am still in charge of his life, and deal with his carers, doctors, social workers and teachers. We Skype him on his iPad and I send him letters and chocolate buttons every week. To the extent that he can’t live with us any more, the answer is simple. If he were still at home, I wouldn’t be here now.

Jane Raca is the author of 'Standing Up for James’; www.standingupforjames.co.uk. For support on autism, visit www.autism.org.uk